Real Mom’s Share: Lisa Lupi

Lisa Lupi

We are happy to profile mom, Lisa Lupi. Lisa has a daughter and a 28-year-old son, JP, who is in a wheelchair. She is also living in a blended family and helps raise her partner’s 15-year-old son. Blended families present their own unique challenges, and when there are 2 with varying abilities, and both want to be King, Lisa reminds them that she is the Queen and rules the land.

Lisa is an inspiration, as you will see when we tell you her story – her journey to get from where she was to where she is today. She empowers others to take the first step in their lives. We asked Lisa some questions and are pleased to provide her insights below.

What mistakes did you make at the beginning?

I was literally a super mom from Monday through Friday. There was therapy almost every day after school, therapeutic horseback riding one day a week, sleepovers all the time, and I always had all the kids at my house and had them bring their brothers so they could play with JP. I wanted him to have the experience of a ‘normal’ childhood. I volunteered at school, was a Girl Scout leader, CCD teacher, and helped with the children’s choir at church and any club and activity my children were involved in.

But, on the weekends that we weren’t doing anything with scouts or whatever, I felt groups are the best thing we can do for ourselves. I ran a parent-to-parent support group for five years and was involved in it for almost 15, helping with marketing, throwing Christmas parties, and such. Burned out, overwhelmed, trying to be everything to everyone and make sure my daughter has a normal childhood so she doesn’t resent her brother so she’ll want to take care of him when he gets older. Other parents don’t have to think of everything that keeps us up at night.

How do you handle things now that are different from those in the past?

It is all about practicing self-care. Right now, that includes doing yoga.

I think it is a huge issue in this community that no one talks about what we are going through. Kids have a meltdown – medicate them; parents have a nervous breakdown – medicate them, have a toothache – medicate it. All addiction stems from trauma and giving birth to a special needs child and long-term care of a special needs child is a trauma. Special Needs Parents Traumatic Stress Disorder is real, and self-care is far superior as a tool to avoid the self-medication cycle.

And I think some of us at this age now, I’m turning 60, and I see my friends in Miami retiring and having grandchildren, taking a class, maybe teaching a class, and I’m still changing diapers and raising ‘children’ 28 & 15. I’m exhausted, or was until I decided to practice self-care.

“There is no shame in getting a little help to make your outsides feel like your insides, but sometimes you have to make your outside look a little better to make your insides feel better.

Part of this journey is getting sober, and I think many many parents in my situation might have some of the same issues. Can I talk about my whole journey? AA, church, faith, the connection with other Moms in our ‘elite club.’ We as women and as mothers need to embrace and lift one another up because the truth is that men will let you down, and they will. You have to be around the type of women that will hold you up. I am lucky enough to have those women in my life, and they chose me to be in their life. What an honor!

God truly gave me a second chance, and I do not want to disappoint Him, even though I fail every day. But I was told in AA that if I didn’t drink today, I was successful, and that’s all that matters because I can’t help my child or anybody else from the bottom of the bottle. God‘s not at the bottom of the bottle, but He is at the top, where the light is, and he will meet you there and take you on the most amazing journey.

I am proud of my sobriety. I have no shame in my game. God gave me a second chance at a beautiful life; shame and guilt keep us unhealthy. We are only as sick as our sickest secrets… that’s another pearl of wisdom I learned in AA.

Second, there is no shame in getting a little help to make your outsides feel like your insides, but sometimes you have to make your outside look a little better to make your insides feel better. Just a few minor adjustments to help me look better.

What advice do you have for other parents?

I do not want another parent to feel as alone as I once did. Thank God for Facebook because at least, sitting in the hospital, you can still connect with friends, but as we all know, we don’t get invited to most things, and the farther and older our children get, the less we get asked.

One impossible task is treating all your children equally–giving each child the same time. When you have a loved one with special needs, we live with constant guilt. Is it my fault? Can I do more? The answer is we sometimes need to do less and be in the moment. Special Needs Mom guilt puts good ‘ol Catholic guilt to shame. We have to stop beating each other up! When other moms would say to me, “So, you are just a stay-at-home Mom?” Truly, we have devalued the role of Mom, aka ultimate caregiver! I went from one challenging family situation to another.

When my mother-in-law was dying, my father-in-law explained that he had to carry her to the bathroom sometimes in the middle of the night and help her shower. I looked at him as seriously as all could be and asked him do you think JP gets up in the middle of the night and walks to the bathroom? Do you not know what we do and what we live with? We see you at least once a month, and you see us carrying him. Do you not understand what is going on here? It is amazing how little the general population understands what we go through daily.

Other people keep going on with life and expect you to either join them their way and leave your loved one home, or just don’t bother coming. Educating others is important. But taking care of you and your needs has to come first.

Why Using a Wheelchair Is the Opposite of Giving Up

You May Also Like

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• Balancing the Care of Siblings with Different Needs
• Early Intervention: First Steps in the Right Direction
• I Do Not like Being a Special Needs Parent and That’s OK
• Coping with the Life You Never Imagined
• Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves
• A Complete Guide on Positive Behavior Support for Children With Special Needs
• Family Chat: Improving Lives with Positive Behavior Support (PBS)
• 8 Ways to be a Great Advocate For Your Family Member With Special Needs
• How to Get Free From Unrealistic Expectations of Motherhood
• Father’s Perspective: Raising a Child with Special Needs
• Daddy Loves You: A Reminder for Daddies of Children with Special Needs
• Being United, Pampering, and Taking Care of Ourselves
• Avoiding the Power Struggles with Your Child
• Developing Your Own Network

This post originally appeared on our January/February 2023 Magazine